Monday, November 24, 2008

Autism in the DSM-V

Yesterday's post on the proposed inclusion of "relational disorders" in the DSM-V got so long, I decided to put the rest of my DSM-V observations in a separate post. Hopefully this one will not reach such an epic length.First, autism. There are a lot of proposed changes to the diagnostic criteria for all the autism-spectrum labels, which you can read about here at Autism Vox, or here at the American Psychiatric Association's webpage. I don't want to go into all of the proposed changes here, so I recommend clicking the links.I just want to point out two relatively minor points in the Neurodevelopmental Disorders Work Group's agenda that interest me: first, for the first time they're going to look into how autism might look somewhat different in different groups (they mention females, adults and cultural minorities) and need alternative diagnostic criteria; and second, they're entertaining the notion that autism might not be lifelong. From the APA's online summary of its Autism and Other Pervasive Developmental Disorders Conference, here's what the panel on International, Cultural and Gender considerations in the diagnosis of Autistic Spectrum Disorders* had to say:

In his introduction, Poul Thorsen, M.D., Ph.D., (Aarhus, Denmark) focused on gender differences, noting that the male-female ratio for a diagnosis of ASD is 5:1 whereas the ratio for childhood autism is 3-4:1. ... Autism sex ratio (male:female) is lower in individuals with ID [Intellectual Disability] than in individuals with normal cognitive functioning and lower in individuals with significant dysmorphology or microcephaly than those without. Data from a Danish psychiatry registry of children born from 1990 to 1999 found that males on average met 0.63 more items than females. ... He concluded that since males consistently met more autism items than females, the current diagnostic criteria may favor the diagnosis of autism in males. (emphasis mine)

Other ideas to come out of that panel were:

That studies of autism prevalence are likely to give us a skewed picture of autism itself, since most of the people recruited for those studies are preschool and school-age children signed up for special services

That cultural and linguistic factors should be taken into account when diagnosing autism**

That sometimes what appears to be autism is actually a response to trauma, and

The panel on whether autism can go into "remission" echoes some of the concerns about diagnostic criteria for autism being too age-specific:

Craig Newschaffer, Ph.D., (Philadelphia, PA), in his presentation, noted that we are still at a point where the connections between [the?] pathology and the phenotype of autism are not understood. How the manifestations of underlying pathology change over time and what, if any correlations exist between pathology and clinical phenotype are still unknown. Regarding the evolution of the behavioral phenotype over the life course, there are very few cross-sectional studies in adolescents and adults, and even fewer longitudinal studies. The lack of availability of age-appropriate measures may contribute to this lack. The few small sample studies that have been published focus on the loss of diagnosis (typically in children) and presentation of previously undiagnosed adults. From the clinical perspective, should the diagnosis of autism be lost when symptom-based criteria are no longer met? This has potential impact on treatment plans and access to services for the child or young adult and their family. The diagnosis of ASD in symptomatic adults is also difficult, due to the lack of tools appropriate for use in adults and the difficulty in obtaining the developmental data required to make a diagnosis of ASD (which must be present before age 3 years). The differential diagnosis is particularly challenging in adults because of the number of other disorders that affect the social domain. These limitations suggest that other features (e.g., nonverbal communication, prosody, subtle use of language, posture, etc.) might prove to be better diagnostic criteria for adults? Without such clarity, it is questionable whether the prevalence of ASD in adult populations can bevalidly and accurately estimated through epidemiological studies.

This has the potential to be a good thing --- in that they're looking to characterize autism across the lifespan, and recognize that adult autistics are more than just autistic children who happen to be grown --- but the question of whether to drop the autism diagnosis from people who no longer meet the "symptom-based criteria" strikes me as leading down a blind alley. It seems to be an attempt to define the problem (of autistics maturing and exceeding doctors' expectations of them) out of existence by declaring those people no longer autistic.

*Of all the panelists quoted/paraphrased above, only one (Poul Thorsen) is on the Neurodevelopmental Disorders Work Group for the DSM-V. So his ideas, at least, are pretty likely actually to make it in there.**The example given is of adapting the Autism Diagnostic Interview for use in China, where the main language (Mandarin) apparently doesn't really have separate verb tenses for singular and plural, or for past and present, and where "the cultural norm ... is for gestures to be discouraged and for persistence to be highly valued." You can probably imagine how someone used to the way Americans behave around other people might find most Chinese to be "autistic" in their reserve.

2 comments:

This has the potential to be a good thing --- in that they're looking to characterize autism across the lifespan, and recognize that adult autistics are more than just autistic children who happen to be grown --- but the question of whether to drop the autism diagnosis from people who no longer meet the "symptom-based criteria" strikes me as leading down a blind alley. It seems to be an attempt to define the problem (of autistics maturing and exceeding doctors' expectations of them) out of existence by declaring those people no longer autistic.

Indeed. While I am definitely for making societies more flexible and accommodating in ways that may eventually mean some people's differences aren't medicalized, I don't much like the idea of a board of psychologists, etc., deciding that lack of certain symptomatic expression in adults means those adults aren't autistic. To me that's tantamount to saying, "Your brain doesn't work in an autistic manner" based on arbitrary and fluid outward signs, which IMO (given the power psych people currently have) could be very detrimental to autistic adults in the process of trying to work out functional ways of living.

I imagine a lot of folks my age or thereabouts on the spectrum (I'm 29) have probably already gone down the road of attributing differences/difficulties to "character flaws" and "not trying hard enough" to the point of (sometimes literally) leading to banging our heads against the wall. Different kinds of brains exist and human culture needs to face that fact, not try and define it out of existence. For me knowing I am autistic is useful because it gives me a means to access information that might actually help me operate in the world, as opposed to just trying and failing to do things in more standard ways.

I know this is an overused analogy now but it really is like the difference between being a cat and knowing it and using that knowledge to one's benefit, and being a cat but viewing onesself as a defective dog.

A Portrait of the Autist

I'm a recent KU graduate with degrees in biochemistry and English lit. I'm also on the autism spectrum, having been diagnosed with PDD-NOS at age 5. It's quite likely that, were I to be seen now, I'd be diagnosed with Asperger syndrome.
I write about a lot of things, which include but are not limited to: autism research, psychology, neuroscience, feminism, autism advocacy/neurodiversity, autism in literature, and broad, sweeping cultural critique. I also draw, paint and take the occasional random picture.
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Recommended Reading

These are books I've read that I thought worthy of recommendation; it's not meant to be an exhaustive reading list in any topic. I will add to it as I discover more books I think people need to read.

Because I believe that true freedom of thought is incompatible with a world where all our books, opinions, news and entertainment comes from the same handful of corporations, I have linked to independent bookstores whenever I could.